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Thursday, June 20, 2013

Some parents of children with disabilities are riddled with
guilt and this is totally inappropriate.

A child is a child is a child and should be valued and
loved.

I remember a dear friend who had a son who was severely
disabled and never developed more than being about three-feet tall. This boy
didn’t speak, walk and was completely dependent upon his mother for all of his life.

Every time I saw his mother with her son, my friend was
holding her boy on her lap in her arms.

When the young man died at age 17, I thought my friend
would be OK rather quickly.

I was so wrong.

It's been years now, but each day she thinks of her son. And, every time she thinks
of him, I can see sadness in her beautiful eyes.

A disabled child is a child who should be valued and loved
unconditionally no matter what the level of disability is in that child.

I remember feeling guilty as a child and later as a young
man that my parents had to spend so much extra time with me because I was born
with a disability. But I later learned that all parents should spend the maximum time and energy with each child they have so that
child grows to be a loving, creative, and productive person.

I felt guilty another time when someone said my parents never
owned a home because they had to pay for my orthopedic surgeries, braces,
doctor visits and special orthopedic shoes that, in the 1960s, cost about $300
a pair. They’d last about three months because I dragged my feet and wore out
the soles of the shoes quickly.

With entities such as the Macomb-Oakland Regional Center
we, as a species, are learning that a child is a child is a child who because
he or she is born on this planet deserves love because they are alive.

I got lucky and my dad saw me graduate from college and get
a steady job. He died when I was 26 but I was on my way, thanks to his
incredible determination he ingrained in me.

My mother, now 97, still is alive and loves my wife, JoAnn.
Mother is proud that I made it to the world of the so-called able-bodied from
the world of hospital rooms with holes in the ceiling tiles, schools with
barred windows and the cold operating rooms. She doesn’t understand much about
fighting for civil rights but she was my greatest advocate when the word
advocate wasn’t used much. She made sure I got the medical treatment I needed
and into a school, even though it was one only for children with disabilities.

The parents who should feel guilty are those who bring kids
into this world and then walk away. CBS News recently reported half of the first
babies being born in the United States are to unwed mothers. They and the
fathers are the ones who should feel guilty, not the parent of a child with a
disability.

In fact, if they want to know what love is look around as you roam this world. Sooner than later you will see a mother holding a severely disabled child in her arms and humming to
that child. That is the essence of love and the opposite of guilt.

Jerry Wolffe is the Rights Advocate
at Large/Writer in Residence the Macomb-Oakland Regional Center. He can be
reached at 586-263-8950.